UN expert calls for meaningful participation in national and global governance of digital health

GENEVA (22 June 2023) – A UN expert today called for a human rights-based approach in national and global governance of digital health which ensures the meaningful participation of civil society and communities and young people.

In her third report to the Human Rights Council, Tlaleng Mofokeng, UN Special Rapporteur on the right to health, focused on digital technologies and the right to health. The report analyses the impact of digital innovation and technologies on the right to health, including the availability, accessibility, acceptability and quality of facilities, goods and services. It also analyses the impact of digital technologies on privacy and data protection.

“The growth of technological innovation has been rapidly redefining and reshaping the right to health,” Mofokeng told the Council. “Although new technologies can foster inclusion, participation and new opportunities to improve access to underlying determinants of health, digital transformation may also undermine the right to health, if they are developed, used and regulated without consideration for their human rights impact,” she said.

The report indicates that digital innovation and technologies offer important positive opportunities to actively address and overcome socio-economic inequalities by empowering women, and marginalised groups to better realise their sexual and reproductive health rights. It also stresses that the use of digital technology for sexual and reproductive health services comes with risks, in particular surveillance by both State and non-State actors in the context of criminalised health services, such as abortion.

In her report, the Special Rapporteur seeks to clarify the legal obligations that arise under the right to health framework, from an anti-discrimination perspective, recalling that the same rights that are protected offline must be protected with the use of digital tools and in online spaces.

The expert highlights that private ownership of personal medical data, in a low data privacy setting and with limited oversight, intensifies concerns as to how genomic data can be used for capitalistic gain by businesses, and used in police surveillance and law enforcement, which further creates vulnerable situations for certain groups of people, for example, those with HIV, migrant populations and LGBTIQ+ communities.

“There are a number of global and national efforts that are now underway to strengthen the governance on digital health,” Mofokeng said and added that “meaningful participation is key.”

“All stakeholders must respect principles of non-discrimination, equality and privacy,” the expert said. She also noted the importance to count on a policy approach to the right to health regarding digital innovation and technology, to allow for transparency, accountability and recourse when rights are violated.

ENDS

The expert: Ms. Tlaleng Mofokeng (South Africa) is the Special Rapporteur on the right to health since August 2020. She is a medical doctor and Adjunct Professor of Law at Georgetown Law centre and is distinguished lecturer at O’Neil Institute for National & Global health law.  She has expertise in advocating for sexual and reproductive health rights and providing care for adolescent health, transgender affirming health, abortions. She is has experience with providing health and human rights training for healthcare and legal professionals and her areas of focus have been on legislative reform and policy, gender equality, maternal and neonatal health, universal health access, post violence care, menstrual health, HIV management and health communication.

The Special Rapporteurs and Independent Experts are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent of any government or organisation and serve in their individual capacity.